How the Netherlands made history


Strategies of that Wildly Successful Dutch Petition

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An independent group of ten severely ill patients, Groep ME Den Haag, with the help of many dedicated patients and their loved ones, were able to gather 56,000 signatures for their petition for increased research.

That is roughly the equivalent of 15,000 signatures in Ireland, 75,000 signatures in Australia, 115,000 signatures in Canada, 215,000 in the UK, and over a million in the US!

The result has been a tangible increase in awareness and public pressure for ME research in the Netherlands.

We asked Rob Wijbenga of the Dutch ME/CFS Association (ME/CVS Vereniging) how Groep ME Den Haag was able to gather so many signatures. Here’s what we learned.

Take the petition into your community

The most important thing I learnt is to indeed expand the petition to physical lists and go about the streets. Two patients and their mothers mobilized their entire village and almost all villagers signed.

Here are just a few ideas of places where able patients and healthy allies can collect signatures:

  • Doctor’s offices, support groups, or conferences
  • Busy downtowns, high streets, and city centers
  • Shopping malls, coffee shops, and grocery stores
  • Speak before your school assembly or church, synagogue, or mosque congregation
  • Go door to door on your street, in your apartment building, or your neighborhood
  • Are you a member of a sports team, book club, or other group? Ask your teammates or fellow club members to sign.
  • Do you work in an organization? Ask all your coworkers to sign.
  • Planning a summer BBQ, holiday party, or birthday celebration? Ask your guests to sign.

 

One Person Can Make a difference

An uncle of an ME-patient who died due to a tardy diagnosed breast cancer (she was suffering from the non-existent disease ME, so they overlooked her cancer until it was too late) made it his job to collect signatures each day from early morning until closure time for weeks on end in a shopping mall, and collected over 21,000.

While many patients are too sick to advocate in the real world, a single motivated ally can make a huge difference. Not every patient has family support and many caretakers are already stretched thin, holding up the world with their bare hands.

But sometimes those who love us would like to help but don’t know how. Sometimes those around us are waiting to be asked.

Petitions are more than petitions

Teachers in schools asked their pupils to sign which all of them did, and although their signatures didn’t count because of the minimum age of 18 yrs, ME became a more familiar name all over.

Petitions can do so much more than send a signal to their intended target. They can be reasons to bring people together and build relationships to help further ME activism. They can be opportunities to educate and inform our wider communities, to invite more allies into the movement.

Here’s what you can do

Help us increase signatures for the US funding equality petition
  • Sign the petition: Find and sign the petition for your US state. Not American? You can support us by signing the global solidarity petition.
  • Share it with your friends and family: Share the petition landing page with friends and family. Write an email to just five new people, share your story, and ask for their support.
  • Take the petition offline and into your local community: In the US? Take your computer, tablet, or this printable version of the US funding petition into your local community. You can email scanned copies to info@meaction.net or snail mail to PO Box 1248, Princeton, NJ 08542. Please email us in addition so we can confirm receipt.
  • Volunteer to become a state petition leader: Recruit and organize other petition volunteers in your state for maximum impact.

 

Start a petition for funding equality in your country

The beauty of science is that discoveries in one country can benefit patients no matter where we live, but public funding and research infrastructure is still a country by country fight. We need to bring this conversation anywhere there are talented scientists and researchers who need funding to study this disease.

We need petitions for research funding not only in the Netherlands and the US, but all over the world.

 

 


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